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Had pain in hip for a year, bone cancer discovered 3 weeks ago

Joan M's picture
Joan M
Posts: 374
Joined: Oct 2016

I haven't been on the forum much lately due to stressing out over many new developments. 

I learned 3 weeks ago that I have a "lytic bone lesion" in my lower pubic ramus - at the part of the bone that hits the chair when you sit.   A lytic lesion eats away at your bone, so it looks like Swiss cheese and makes your bone brittle.  Colon cancer causes this type of lesion in bones if it goes into your bones. I causes pain because it also gets inflamed and puts pressure on tissues and nerves, according to my doctors. 

It took longer to diagnose because of a 3.5 year old injury to my left hip, we never suspected the pain was from cancer. 

I had doctored for the hip pain when I was first injured, but got tired of going to doctors since I have so many oncology appointments.  However the pain got worse after driving home with my mother from MD Anderson, she lives in Texas and comes north for the summer.  The road trip aggravated the area and caused extreme pain. 

I have had pain off and on for past 3 years, had xrays and physical therapy, had neurological and muscle function tests and the doctor said all those tests looked good.  She finally ordered an MRI since it hadn't healed.  The MRI showed abnormal  bone marrow signal in the inferior pubic ramus and suspected cancer, so ordered a PET scan.  The area lit up to an 8.9 on the PET compared to 3.1 in the old lung tumors that are almost dead.  Last summer they saw a lymph node on the CT scans that still measures 7.7 on the PET, but they never saw the cancer in my bone until the PET a few weeks ago.

I met with  my primary oncologist Thursday, May 16th and also saw a local radiologist who said the only way to treat it is with radiation.  He said I needed 5 to 10 treatments every other day, and could very likely have some damage to my rectal area and bladder, possibly vaginal damage, and maybe sunburn on my skin where the radiation entered.  I asked for a referal to Mayo for proton beam therapy since it's supposed to be so precise and not go through the tumors to other tissues. 

Mayo scheduled me for the following Monday for tests and I saw several doctors there all day Tuesday.  The radiologist at Mayo said proton beam therapy is harder to control than isotopic photon therapy that he referred to as IBRT.  He said I would not have any damage to surrounding tissues because he would use several angles so that the tumor would get the full dose, but surrounding tissues just a small fraction and would have none or very minimal damage. But that I could have a spike in the pain for days or even a week.   He also said that one treatment at 24 gry (cGy ?) is as effective biologically as 5 at 10 Gry.

He was able to get the simulation done Tuesday afternoon and scheduled radiation for Thursday.  I was very nervous because I've heard of all the problems others have had from radiation and almost backed out.  He showed me the picture of all the angles he was shooting  from and explained things to me so I wasn't as nervous.  I had taken pain meds right before the radiaion and didn't feel a thing.  The pain spiked for a couple of days and then got better.  I have just been taking NSAIDs the last several days because I need to drive and the pain is almost gone.     I did not  have any burning on my skin. 

I was so nervous after finding out cancer was in my bone, and more so because we all thought it was a new lesion, however I firmly beleive it developed over the several months I was off chemo for various surgeries and medical procedures from September 2017 to June 2018.  The pain over the last year has been in the exact same spot ,  whereas before that it was more in the hip joint area.  

Everything went so fast once it was diagnosed that I was almost in a state of shock.   The reason Mayo got me in so quickly was because my oncologist  there was pulling strings to get me in and get the treatments done as soon a possible.  Radiology didn't have any openings until June 17, but saw me May 21 and performed radiation treatment on May 23.   

I was extremely busy with my family the past month too because my son just turned 18 and also graduated from high school, we had to postpone his graduation party until next week because I've been too stressed and was really tired from the radiation.  

And we're also taking care of my mother in law who is in a wheelchair. So yes, my husband and I have a very busy household, with 2 teenagers, and both of our mothers living here and other children and grandchildren  visiting often, as well as friends and kids friends stopping over regurlarly.    

It took me awhile to calm down.  I'm doing better since graduation is over but stressing about preparing for a graduation party for 50 to 100 guests - you never know who will actually show up so prepare for more, and maybe fewer will come than expected right?   A few family members have agreed to help clean house and do yard work.  I wouldn't be able to do it without their help. 

BTW:  My oncologist at Mayo also ordered a biopsy of the lymph node to see if I am eligible for targeted therapy, or if my cancer had mutated.  The biopsy was performed via bronchoscopy last Wednesday, but that there were not enough cancer cells to do the TEMPEST test so he is using stored tissue from my colon tumor to see if I can get targeted therapy at Mayo.  MD Anderson had performed a biopsy on one of my lung tumors for a trial there but also did not have enough cancer cells to do the TEMPEST test, so apparently the Folfiri is kicking this cancer's butt!

I wanted to share the information about my new bone lesion hoping it may be helpful to someone and am happy to answer any questions under this post, or you can send me private message. 

God has been good to me and has kept me alive for a reason, and relatively pain free except for this hip thing and a little arthritis.  

 

Joan  

  

Trubrit's picture
Trubrit
Posts: 4828
Joined: Jan 2013

That was a hard read.  I am so sorry you have been going through so much, and we haven't been here to support you.  I can imagine the fear, heairng about yet another Cancer.  How blessed you have been, to have had treatment so quickly.   I do so hope that the radiation knocked the socks off of the bone Cancer, and that you find out the lymph node can be dealt with quickly as well. 

Congratualtions on having a son graduate.  Please, try your bestest NOT to overly stress about this graduation party. I'm sure at the end fo the day, your son won't care if you just had a BBQ in the back garden.  Make it as stress free as you possibly can.  Stress + Cacner are boosom buddies. 

Tru

Kazenmax's picture
Kazenmax
Posts: 349
Joined: Feb 2016

Gosh, Joan, that’s a lot! How wonderful that you were able to get the therapy that you need. Sending you love and strength to get through. 

k

Joan M's picture
Joan M
Posts: 374
Joined: Oct 2016

It seems like many people develop cancer during a period of time when they are under a great deal of stress.  And then find out they have cancer which causes them to stress even more. 

The researcher I met with at MD Anderson is studying this connection and had a few questions on the survey regarding stress levels before and after cancer diagnosis.  It will be interesting to see if she publishes anything regarding that.  

I am doing his party at home and yes, a few relatives will help me prepare.  We will have some food and hopefully yard games if the weather cooperates.  And I'll take my xanax a bit more to get through this.  I've been really crabby lately from all the stress.    

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Oh my goodness, I don't know what to say. I'm so sorry for this latest development. It just never seems to end, does it. I hope the radiation is effective. Interesting about the proton beam therapy, I've never heard of it.

Best of luck with this!

Jan

SandiaBuddy's picture
SandiaBuddy
Posts: 878
Joined: Apr 2017

What a situation!  And then life seems to come along to compound it, one generation graduating and another aging. It sounds like you are getting good treatment and I wish you all the best success with it.

Annabelle41415's picture
Annabelle41415
Posts: 6183
Joined: Feb 2009

Sounds like a lot going on and I'm sorry that they discovered this.  Hoping that this new treatment kills all the cancer and you can be free from pain.  Congratulations on your son's graduation.  Try to let someone else do all that work - that's the last thing you need is to be stressed about a party.  Have a good time at it though and try to enjoy.  Wishing you well.

Kim

Butt's picture
Butt
Posts: 299
Joined: May 2018

I perhaps missed something in the post. It sounds to me you are not talking about bone cancer but a met from a colon one. I also had a whole in my bone from a colon cancer. PET showed it right away. 1o radiations in that area to heal it. Butt. 

Joan M's picture
Joan M
Posts: 374
Joined: Oct 2016

Colon cancer eats at the bone and causes small holes at first, like Swiss cheese.  It also causes the bone to be brittlle. 

My oncologist is putting me on Zomata to help strengthen the bone.  

Joan M's picture
Joan M
Posts: 374
Joined: Oct 2016

It means alot to know people understand.  

My husband always knew he would be the one to care for his mother, but didn't think it would be so soon.   She just turned 80 and suffers from clogged arteries and had surgery to re-establish blood to her legs. She developed gangrene in her right foot, and the doctor said she may need amputation on right leg anywhere from foot to below the knee.  Yesterday he said it is healing well and doesnt believe she will need amputation. She requires some help with getting her food and coffee, putting my old waitress skills to use.  Also needs to have iodine put on the sores everyday and help showering.  She's had a home health aid help with the showers and my husband has been dressing the wound since I am on chemo and not supposed to have contact with bodily fluids, etc.  At least according to my doctor.  

My mother is 76 and is a great help with cooking, housework and even babysits for the little great grandchildren, and helps me care for my mother in law. She's a great help!  

Not trying to complain, even though it may sound that way.  Just adds to the stress level. 

Msboop15's picture
Msboop15
Posts: 81
Joined: Apr 2019

sounds like you went through & are going through hell. Kudos to your oncologist for pulling strings at Mayo. Sounds like he’s a “keeper”. 

Sending hugs & good thoughts...

myAZmountain
Posts: 256
Joined: Apr 2018

So sorry to hear you are having to deal with so much stress and this bone met! I am fascinated by the proton therapy--were you at Mayo Rochester?  I have yet to find anyone that can give a clear cut criteria for when to use it. Praying that things will get better!!

Joan M's picture
Joan M
Posts: 374
Joined: Oct 2016

The radiologist there said it was harder to control than other forms of radiation.  It is mostly used for brain tumors and is also used in prostrate cancer.  I went to Mayo because I was convinced I needed the proton beam therapy to avoid damaging any surrounding tissues.  

My doctor used "photon" radiation and also used the term "Isotopic".   It says "photon IBRT" in my records if that means anything to you.  The doctor at my home clinic was going to use SBRT.  I don't understand the differences between all the forms of radiation.  

Thank you, I am feeling better today.  

Ruthmomto4's picture
Ruthmomto4
Posts: 634
Joined: May 2013

what a wild ride you continue to have! I am so happy to hear they were able to help you so quickly. You certainly have a lot going on! My Dad had the surgery on one of his legs your mother in law had. It helped him but he refused to do the other leg. I hope things calm down and go smoothly for you for a long time!

Joan M's picture
Joan M
Posts: 374
Joined: Oct 2016

My son's graduation party went really well!  We had about 75 guests or maybe a few  more.  Everyone seemed to emjpy the party, and had fun visiting and playing yard games.

Things should calm down for awhile, then get my son ready for college.

I took a short break from chemo - like a week or so extra just because of all I had going  on.  Just didn't want to be sick during this time, and I needed the energy to get through the last month.  I start back on chemo tomorrow. I really dread the chemo days.  Trying to convince myself that I won't get sick this time.... an attempt at using psychology to get through the worst part.

Thank you all for the support! 

SandiaBuddy's picture
SandiaBuddy
Posts: 878
Joined: Apr 2017

Congratulations on a successful party and best of luck facing the upcoming challenges.

Annabelle41415's picture
Annabelle41415
Posts: 6183
Joined: Feb 2009

So glad that the party went well and don't blame you for taking time off for the party from treatment.  My daughter was in the Army stationed in HI when receiving treatment and waited 3 weeks because spending time with my daughter and new granddaughter was more important than treatment.  So glad you had some time off and good luck in the upcoming treatments.

Kim

Twinzma
Posts: 210
Joined: Jan 2018

Actually have another "S" word in mind, but I will keep it clean. Joan I am so sorry honey that you are now back in treatment. But way to go, throwing a party like that! And congratulations Mama on your Son's graduation, I bet you are so proud! I hope that all goes well and you can find Nedsville very soon. Hugs!!! 

 

Joan M's picture
Joan M
Posts: 374
Joined: Oct 2016

I haven't been on the forum much or other social media most of the month. I've had some really good family times this month, and some stressful, and some very sad.   There's been alot of fun times, and a crazy/busy month with alot of friends and family visiting, my grandchildren staying over, Bike rides, motorcycle rides with my husband.  

Then I had some health problems for me with severe pain and weakness in my left leg possibly caused from the radiation?  More likely though from all the housework and yardwork in preparing for the party.  and helping one of the boys clean for apartment inspection and lease renewal.  I really overdid it.  

To the point of collapsing, having severe chills, and high fever (103.5), and ending up in the ER and hospitalized in ICU with tachycardia, exremely low blood pressure (80/40), and low heartrate (<45), low magnesium, low potassium, and left brachial bundle branck block(not even sure what that means!?)

My mother in law had similar chills and high fever a few days before me, but the doctors had no explanation  for what caused it the fever and chills for either of us.  All tests for bacteria and viruses have been negative.  My doctor ran the tests for 7 days, and all remained negative.  I had a CT scan to check for any pockets of infection, and they could not see  anything to explain the cause of my symptoms.   

I have been trying to enjoy myself anytime I feel remotely up to it.  

June 2nd, my son graduated.  June 9th we had his graduation party, June 16th, celebtated Father's Day,  June 18th, my mother in law went into the hospital.

June 21st I was helping my 24 year old, and he had to bring me to the ER, and I ended up in the hospital all weekend.  That same night he went with his friend to a casino at an Indian reservation and his car was stolen.  He and his friend were stranded with no hotel rooms available there, and spent the night looking for the car and talking to police who really didn't seem to care about his car.  June 22, He ended up in the hospital from depression/suicidal thoughts.  I got out of the hospital on June 23 and then he got out a couple days later.  We had to make another police report and get the vehicle listed on a statewide data base.  The car was found and we had to wait for police to process it. It had a flat tire, keys were lost, and some other body and interior damage.  We tried going to get it but couldn't make it to the town it was found when the tires shops were open so had to wait until Monday.  We finally got the car, and although driveable, had a lot of damage both inside and out.   That was a very traumatic and dramatic weekend.  We've been dealing with insurance issues, and the car may be totalled due to the damages.  

June 30th, more drama this time with my 18 year old who just graduated decided he wanted to move out but does so by pulling teenage disrespectful crap.  I was so upset and just felt like complete crap.  But decided to pull myself together and go to the lake with my husband, daughter and grandkids as planned.   So we ended up having a really good time.         

The next day my 18 year old comes with us to get the car, and is very respectful and apologetic. 

Reflecting on the events of the month, things were more stressful after I got out of the hospital, so it wasn't stress that put me into the hospital.  Just not sure what it was.  One theory is possiblr interactoins with medications:  I had chemo one week.  The next week I had problems with allergies, and the doctor put me on zithromax although I didn't have an actual infection.   The next week, I went on prednisone for the injury to my leg. I saw my cardiologist on Tuesday and had an echocardiogram  and everything was okay with my heart.  That Friday, I went into the ER and was put in ICU due to tachycaridia and low heart rate, etc.  The next day on Saturday, I felt 100% better, but was kept in  hospital until Sunday and my heart was doing fine.  It just doesn't make any sense.       

One weekend I'm in the hospital, and the next I made it out on the lake with the jetski.  This weekend, celebrating the 4th of July with my family.  My grandaughter said "This was the best 4th of July ever!"  and I agree - we had a blast!  It's my husband's favorite holiday and I really love watching him light off fireworks!

My mother tells me I need to slow and down and rest.  I get sick and tired of being sick and tired.  Life is too short!

Collapsing like I did, made me realize how quickly my own health can change. 

My 24 year old's mental health problems and suicidal ideations, caused alot of heartache as did the 18 year old's disrepect.  Both are doing well today.  Tomorrow could be entirely different.  

Hope and pray that these kids will pull themselves together.  

I want to enjoy each day of my life.  Even if I spend it in a hospital because I'm sick or visiting a relative, or dealling with kids who just don't appreciate me.  Although it was stressful, I learned alot this last month about taking one day at a time, enjoy the good days, and on the bad days push through it and deal with the drama, then enjoy what tiime you can.          

  

SandiaBuddy's picture
SandiaBuddy
Posts: 878
Joined: Apr 2017

Sorry, I caught on just one thing in your post, prednisone and heart problems.  I had some pretty bad heart issues after two courses of prednisone.  I went to a heart specialist and asked him if prednisone could have any influence.  He said "no."  But I researched it myself and found it has a real impact.  The seminal study is link.  Chemo caused heart issues for me and I have found that meds I took in the past (like prednisone, ibuprofen and sudafed) now cause heart issues.  I am mentioning this in case if affects you.  Sorry about all of the other issues in your life.  

Joan M's picture
Joan M
Posts: 374
Joined: Oct 2016

I need to add it to my list of meds I cannot take.  Zyrtec is another - it makes me way too tired, and a bit off balance. 

 

I had the steroids in my system from chemo too, and had a Z-pack, so definitely a combination of factors - the perfect storm for heart problems.  

I'm very sensitive to many medications and don't take them unless I feel absolutely necessary for pain, and usually won't take antibiotics until after the tests are shown to be positive - except in emergency situations such as the recent hospitalization - then I trust God with my life and obey the doctors who are caring for me.   

Had the full regime of Folfiri chemo last week and am supposed to get 5Fu every week but had to cancel it yesterday.  Just wasn't feeling well felt nauseas and sinus problems again possible from allergies, also had bloody mucous when blowing my nose.   I've been resting the last coupld of days and hope to swim at the gym today and get some housework done.   

SandiaBuddy's picture
SandiaBuddy
Posts: 878
Joined: Apr 2017

I had a series of sinus infections while on chemo, so that is a definite possible explanaition.  Unfortunately, a stiff course of anti-biotics is the treatment that works best for me.  It sounds like that is not attractive to you.  You can also do sinus washes, I guess they have neti pots, but I just use some salt water, with a dash of baking soda and an ear syringe.  It can provide some drug-free clearing of the sinuses.  Sorry things are so tough for you right now.

Joan M's picture
Joan M
Posts: 374
Joined: Oct 2016

But only one that was diagnosed as an infection, but if I rememver correctly that test was negative after a couple of days.  I've takeb antibiotics a few other times, but won't again unless the tests are positive.  I have severe allergies in the fall and spring which is the time I am getting the sinus problems.  Also have problems whent the fires from out west blow smoke into our region.   I just need to remember that and get on the claritin and mucinex when the problems start.  

Annabelle41415's picture
Annabelle41415
Posts: 6183
Joined: Feb 2009

Enjoying life daily, is just that, daily.  It's hard because you never know exactly what to expect day to day.  It surely does sound like June has been filled with a bag of mixed emotions, tribulations, and elations.  When you aren't feeling well it tends to even be worse as you are dealing with not only your issues, but others as well.  I'm glad that you are out of the hospital.  Hopefully things will settle down in July and you can enjoy your summer.

Kim

Joan M's picture
Joan M
Posts: 374
Joined: Oct 2016

So far July is going better.  We had fun with fireworks on the 4th and also went to the lake on Saturday.  

Things seem to be settling down at home. My mother in law is in the nursing home.  My mother has been dating and visiting her new boyfriend on weekends.  24 year old has his car back and found a new girlfriend.  My 18 year old is working.  7 year old granddaughter spent a few nights with us and is back home with her mom.  I'm looking forward to some time for myself.

 

Annabelle41415's picture
Annabelle41415
Posts: 6183
Joined: Feb 2009

Sounds like a good turnaround from a hectic June to a little better July.  Wishing you some good quality time for yourself.  You sure deserve it.

Kim

beaumontdave's picture
beaumontdave
Posts: 993
Joined: Aug 2013

Whew! I'm tired pondering how worn out you must feel. That's a lot of stuff going on, I always think of juggling when I remember or hear about stressful, demanding periods like your having. Just trying not to drop a ball, while Life chucks a couple more into the rotation. I hope you catch a bunch of breaks and your load lessens through the summer, with good results from treatment. And by all means, find that "me time".....................................................Dave

Joan M's picture
Joan M
Posts: 374
Joined: Oct 2016

It's slowed down a little, but never a dull moment.  Sometimes I wonder if that's a good thing if I am so busy.  Then I don't have time to sit around and worry about my health.  But of course I need to avoid all the stress since it is proven to cause heart problems and also linked to cancer - which I am experiencing both at this time.  So yeah, gonna just let everyone take care of themselves now that they are "all grown up" being over 18 and all.  It would also be nice to not be helping them out financially - then I can enjoy spending  money on what I like instead of paying someone else's light bills, gas money, and tire repairs, etc. the list is endless.  Guess my kids think I am made of money just because I'm a lawyer.  What they all seem to forget (and I can't imagine why) is that I am not currently working.  Aslo having my own office was expensive and doing work for legal aid clients and other pro-bono work wasn't good for the bank account or retirement.  

If only I could turn back time......... so many things I would do differently.  And since I can't I just need to start from here and go forward and start enjoying the time (and money) I have left. 

   

Joan M's picture
Joan M
Posts: 374
Joined: Oct 2016

I can't believe this and not sure if it's in the above lengthy post:  I have had a different pain in my left leg for over a month now.  Had another MRI and found out this pain is caused by bulging discs in 2 vertebraes in Lumbar spine and it causes inflammation in the nerve that runs down the back of the thigh to knee.    Doctor says a cortisone shot in the back is best treatment, but can also have less invasive procedure such as injection in the knee.  Trying to get that done soon now that I know what is causing the pain.  I've been limping around for over a month and have problems sitting so stand alot.     Carrying anything over 5 pounds causes more pain due to pressure on back.  Sounds like a lifelong issue and will need shots every so often.  Oncologist advises against the shots because of risk of infection and possible problems from cortisone, especially since you need them every couple months. I'm tired of the pain, interferes with sleep and makes me look like an old lady due to the limp,  so I will risk the infection.

And yes, time for  a break from it all.  Praying for that to happen.  

SandiaBuddy's picture
SandiaBuddy
Posts: 878
Joined: Apr 2017

If prednisone led to heart problems, you might want to be cautious with cortisone.  Like you, I was set for the injections, but dropped them when I had the prednisone-linked heart issues.  I would rather live with some pain than die with heart problems.  Coincidentally, I started taking potasium gluconate to potentially help with the prednisone-induced heart problems, and it helped incredibly with the pinched nerve in the leg--that pain is now gone.  I take #3- or #4-99mg pills a day.  It may be unique to me, but I thought it was worth mentioning.

beaumontdave's picture
beaumontdave
Posts: 993
Joined: Aug 2013

I just tried the cortisone shot in my ankle /foot joint and wow, that helped with the pain and movement for weeks, but the podiatrist say he can only do it three times a year without creating other issues. At least I've have the option before a trip or real hike, if I ever get around to it, lol. Stay strong Joan...............................................................Dave

Joan M's picture
Joan M
Posts: 374
Joined: Oct 2016

I was not able to get the cortisone shot for my knee.  I saw a different doctor and he actually did xrays of the knee area and said the shot wouldnt help with the pain issue I am having.  It is more in the muscular area not the joint, and may be caused by the nerves but would have to get the in my back for it to work.  I have to go to physical therapy and see if that helps.  I am willing to try any supplement because these pain meds are not healthy for long term use.  

I've heard that magnesium and potassium are good for the heart.  May try both.

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